To determine sociodemographics and caregiver burdens associated with overnight hospitalization, hospice utilization, and hospitalization frequency among persons with dementia (PWD).

Cross-sectional analysis of PWD (n = 899) of the National Health and Aging Trends Study linked to the National Study of Caregiving. Logistic and proportional odds regression determined the effects of caregiver burdens on overnight hospitalization, hospice use, and hospitalization frequency. Differences between PWD alive not-alive groups were compared on overnight hospitalization and frequency.

Alive PWD (n = 804) were 2.36 times more likely to have an overnight hospital stay (p = 0.004) and 1.96 times more likely to have multiple hospitalizations when caregivers found it physically difficult to provide care (p = 0.011). Decedents aged 65–74 (n = 95) were 4.55 times more likely to experience overnight hospitalizations than 85+, hospitalizations were more frequent (odds ratio [OR] = 4.84), and there was a significant difference between PWD alive/not alive groups (p = 0.035). Decedents were 5.60 times more likely to experience an overnight hospitalization when their caregivers had financial difficulty, hospitalizations were more frequent when caregivers had too much to handle (OR = 8.44) and/or no time for themselves (OR = 10.67). When caregivers had no time for themselves, a significant difference between alive/not alive groups (p = 0.018) was detected in hospitalization frequency. PWD whose caregivers had emotional difficulty helping were 5.89 times more likely to utilize hospice than caregivers who did not report emotional difficulty.

Care transitions among PWD at the end of life are impacted by the circumstances and experiences of their caregivers. Subjective caregiver burdens represent potentially modifiable risks for undesired care transitions and opportunities for promoting hospice use. Future work is warranted to identify and address these issues as they occur.

Lung cancer (LC) patients have shown a predisposition for developing emotional and physical symptoms, with detrimental effects on the quality of life (QoL). This study evaluates the bidirectional relationship between main psychological disorders and clinical/sociodemographic factors with the QoL.

In this observational cross-sectional study, patients with a confirmed LC diagnosis from February 2015 to March 2018 were eligible for this study. Each participant completed screening instruments of anxiety, depression, distress, and QoL assessment. Other relevant clinical data were extracted from electronic health records. Then comparisons, correlations, and logistic regression analyses were performed.

Two hundred and four cases were eligible; of them, the median age was 61 (24–84) years, most had clinical stage IV (95%), and most were under first-line therapy (53%). Concerning psychological status, 46% had symptoms of emotional distress, 35% anxiety, and 31% depression. Patients with psychological disorders experienced a worse global QoL than those without psychological impairment (p < 0.001). Increased financial issues and physical symptoms, combined with lower functioning, were also significantly associated with anxiety, depression, and distress. In the multivariate analysis, female sex and emotional distress were positively associated with an increased risk of depression; likewise, female sex, low social functioning, insomnia, and emotional distress were associated with anxiety.

Emotional symptoms and QoL had a significant bidirectional effect on this study; this underscores the necessity to identify and treat anxiety, depression, and distress to improve psychological well-being and the QoL in LC patients.

The number of patients treated with prolonged mechanical ventilation (PMV) is steadily rising. Traditionally treated within specialized long-term care facilities (LTCFs), healthcare providers are increasingly promoting homecare as a technologically safe, humane, and cheaper alternative. Little is known concerning their informal caregivers (ICGs), despite their crucial role in facilitating care. This study examines caregiver strain among the primary ICG of PMV patients treated at home vs. LTCF.

This study was an observational cross-sectional study. The study enrolled 120/123 PMV patients ≥18 years within the study region (46 treated with homecare/74 treated at the LTCF) and 106 ICGs (34 ICGs/46 homecare patients and 72 ICGs/74 LTCF patients). Caregiver assessment included the 13-item Modified Caregiver Strain Index (Mod CSI) (0–26 maximum); patient assessment included symptom burden (the revised Edmonton Symptom Assessment System).

The mean age of ICGs was 58.9 years old; 60.4% were females; 82.1% were married; 29.2% were patient's spouses; and 40.6% were patient's children. The total Mod CSI was 13.58 (SD 6.52) and similar between home vs. LTCF (14.30 SD 7.50 vs. 13.26 SD 6.03, p = 0.50), or communicative vs. non-communicative patients (13.50 SD 7.12 vs. 13.64 SD 6.04, p = 0.93). Hierarchical analysis identified three clusters of caregiver strain, with ICGs at home vs. LTCF reporting significantly lower mood strain, higher burden, and similar levels of lifestyle disturbance. In adjusted models, homecare was significantly associated with reduced mood strain and increased burden, while increased patient symptomatology was significantly associated with total strain, mood, and burden strain clusters.

Recognizing the different patterns of caregiver strain at home or LTCF is a prerequisite for addressing their palliative care needs and improving the wellbeing and resilience of informal caregivers, who often play a critical role in deciding whether to treat the PMV patient at home or LTCF.

Literature suggests that home care professionals could be at higher risk of burnout than their colleagues in hospital settings, but research on home-based palliative care is still limited. Our study investigates psychosocial risk factors and burnout among workers involved in palliative care, comparing inpatient hospice, and home care settings.

A cross-sectional study was carried out in a single palliative care organization providing inpatient hospice-based and home care-based assistance in a large urban area of Northern Italy. Participants completed a self-administered questionnaire collecting socio-demographic and occupational data, psychosocial risk factors, and burnout scales (Psychosocial Safety Climate 4; Conflict and Offensive Behavior — COPSOQ II; Work Life Boundaries; Work-home Interaction; Peer Support — HSE; Copenhagen Burnout Inventory).

The study sample included 106 subjects (95% of the overall eligible working population) who were predominantly female (68%) and nurses (57%), with a mean age of 41 years. Compared to inpatient hospice staff, home care workers reported more frequent communications with colleagues (p = 0.03) and patients/caregivers (p = 0.01), while there were no differences in the perception of work intrusiveness. Inpatient hospice workers showed lower peer support (p = 0.08) and lower psychosocial safety climate (p = 0.001) than home care colleagues. The experience of aggressive behaviors was rare, and it was relatively more frequent among inpatient hospice workers, female workers, and health assistants. Average scores of burnout scales were similar for both groups except for caregiver-related burnout, which was higher among inpatient hospice workers compared to home care colleagues (p = 0.008). The number of subjects at risk for work-related burnout was similar for both groups.

Our study confirms the presence of psychological and physical fatigue in both home-based and inpatient hospice palliative care. Results suggest that home care assistance may not be characterized by higher psychological burden compared to inpatient hospice setting. Given the general tendency to increase home-based care in our aging population, it is essential to broaden the knowledge of psychosocial risks in this specific context to properly protect workers’ health.

It is widely acknowledged that co-occurring symptoms in patients with a psychosocial and spiritual aspects should also be considered. However, this multidimensional approach is difficult to integrate into daily practice, especially for generalist clinicians not specialized in palliative care. We aimed to identify the barriers and facilitators to multidimensional symptom management.

Focus group meetings were conducted with the following stakeholders: (1) patient representatives, (2) generalist community nurses, (3) generalist hospital nurses, (4) general practitioners, (5) generalist hospital physicians, and (6) palliative care specialists. Audiotapes were transcribed verbatim and thematically analyzed.

Fifty-one participants (6–12 per group) reported barriers and facilitators with 3 main themes: multidimensional symptom assessment, initiating management of nonphysical problems, and multidisciplinary collaboration. As barriers, generalist clinicians and palliative care specialists reported that generalist clinicians often lack the communication skills to address nonphysical problems and are unaware of available resources for multidimensional symptom management. Palliative care specialists felt that generalist clinicians may be unaware that assessing nonphysical problems is important and focus on pharmacological interventions. Generalist nurses and palliative care specialists indicated that hierarchical difficulties between them and generalist physicians are barriers to multidisciplinary collaboration. Reported facilitators included using symptom assessment scales and standardized questions on nonphysical problems.

Generalist clinicians can be supported by improving their communication skills, increasing their awareness of available resources for multidimensional symptom management, and by using a standardized approach to assess all 4 dimensions of palliative care.

We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families.

Bereaved families (n = 85) were recruited from three children's hospitals 3–12 months after their child died of cancer. One eligible sibling (ages 8–17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist).

Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007).

Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.

This study confirms the effectiveness of pretreatment video-based psychoeducation on stress management and relaxation in reducing depression, anxiety, and uncertainty among patients with breast cancer.

We conducted a nonrandomized trial with 86 pretreatment patients with breast cancer who were divided equally into intervention and control groups, and stratified according to cancer stages and patient ages. Omitting the excluded participants, 35 intervention group and 36 control group participants were asked to complete the Hospital Anxiety and Depression Scale and Universal Uncertainty in Illness Scale (UUIS) before the psychoeducational intervention (baseline, hereafter “BL “) as well as 1 and 3 months later. Then, a 2 group (intervention and control groups) × 3 time points (BL and 1 and 3 months post-intervention) mixed models repeated measures (MMRM) analysis was implemented.

Analysis confirmed interaction between 2 group × 3 time points for depression, anxiety, and UUIS. Multiple comparisons revealed that each score in the intervention group was significantly lower 1 and 3 months post-intervention compared to BL. Meanwhile, in the control group, the depression score was significantly higher at 3 months post-intervention compared to pre-intervention. The anxiety scores and UUIS of the same group were not significantly different between 1 and 3 months post-intervention. The effect size values 3 months post-intervention were −0.57 for depression, −0.25 for anxiety, and 0.05 for uncertainty.

Pretreatment psychoeducation reduced depression, anxiety, and uncertainty in the intervention group of patients with breast cancer compared to the control group. The effect sizes at 3 months post-intervention were moderate for depression and small for anxiety. These results suggest the effectiveness of psychoeducation for patients with breast cancer, using videos on stress management and relaxation, early at the pretreatment stage.

To delimit the concept of existential uncertainty in the patient cancer experience from other, related aspects of uncertainty in the context of an existing framework of health-related uncertainty.

In-depth interviews were carried out with six people living with cancer and analyzed using theory-driven, concept-focused thematic analysis.

Our analysis suggests that existential uncertainty is concerned with meaning rather than information; with the person rather than the disease; and with the fundamental nature of our human being-in-the-world rather than the more practical aspects of our relationships with others. Patient expressions of existential uncertainty may involve a nonscientific discourse of metaphor, analogy, and imagination.

It is important for professionals working in supportive oncology to have a conceptual understanding of uncertainty in order to choose how best to respond to patients’ needs, as different interventions may be more or less appropriate to different aspects of patient uncertainty.

Symptoms present at the end of life and the quality of communication with the healthcare team have both been shown to impact family assessments of the quality of dying of their loved one with dementia. However, the relative contributions of these two factors to family assessments have not yet been investigated. To address this knowledge gap, we explored which of these two factors has more influence on family assessments of the quality of dying of long-term care (LTC) residents with dementia.

This is a secondary analysis of a mortality follow-back study. Ninety-four family members of LTC residents who had died with dementia assessed the quality of dying (very good or not very good), the frequency of symptoms, and the quality of communication with the healthcare team using a self-administered questionnaire mailed 1 month after the resident's death. Logistic regression analyses were performed to determine the relative contributions of the two independent variables of primary interest (frequency of symptoms and quality of communication) to the families’ assessments of the quality of dying.

Multivariate analyses revealed that the quality of communication with the healthcare team was closely linked to the quality of dying (p = 0.009, OR = 1.34, 95% CI = 1.09–1.65), whereas the frequency of symptoms was not (p = 0.142, OR = 1.05, 95% CI = 0.98–1.11) after controlling for potential confounders.

Our findings show that healthcare providers’ ability to engage in the end-of-life conversations with families outweighs the frequency of symptoms in family assessments of the quality of dying of their relative with dementia. Enhancing healthcare providers’ ability to communicate with families about the end-of-life care could improve families’ perceptions of the quality of dying of their relative with dementia and, consequently, ease their grieving process.

Fatigue is frequently co-existing with other symptoms and is highly prevalent among patients with cancer and geriatric population. There was a lack of knowledge that focus on fatigue clusters in older adults with cancer in hospice care.

To identify fatigue-related symptom clusters in older adult hospice patients and discover to what extent fatigue-related symptom clusters predict functional status while controlling for depression.

This was a cross-sectional study in a sample of 519 older adult hospice patients with cancer, who completed the Memorial Symptom Assessment Scale, the Center for Epidemiological Studies Depression, Boston Short Form Scale, and the Palliative Performance Scale. Data from a multi-center symptom trial were extracted for this secondary analysis using exploratory factor analysis and hierarchical multiple regression analysis.

Data from 519 patients (78 ± 7 years) with terminal cancer who received hospice care under home healthcare services revealed that 39% of the participants experienced fatigue-related symptom clusters (lack of energy, feeling drowsy, and lack of appetite). The fatigue cluster was significantly associated positively with depression (r = 0.253, p < 0.01), and negatively with functional status (r = −0.117, p < 0.01) and was a strong predictor of participants’ low functional status. Furthermore, depression made a significant contribution to this predictive relationship.

Older adult hospice patients with cancer experienced various concurrent symptoms. The fatigue-specific symptom cluster was identified significantly associated with depression and predicted functional status. Fatigue should be routinely monitored in older adults, especially among hospice cancer patients, to help reduce psychological distress and prevent functional decline.

This study assessed the work-related resources and demands experienced by children’s hospice staff to help identify staff support systems and organizational practices that offer the most potential to prevent staff burnout and enhance well-being at work.

The relationships between individual and organizational characteristics, work-related resources and demands, and burnout and work engagement outcomes experienced by children’s hospice staff were explored using two surveys: the Children’s Hospice Staff survey, completed by UK children’s hospice staff, and the Children’s Hospice Organisation and Management survey, completed by the Heads of Care. We used structural equation modeling to assess the relationships between the variables derived from the survey measures and to test a model underpinned by the Job Demands-Resource (JD-R) theory.

There were 583 staff responses from 32 hospices, and 414 participants provided valid data for burnout and work engagement outcome measures. Most participants were females (95.4%), aged 51–65 years old (31.3%), and had more than 15 years of experience in life-limiting conditions (29.7%). The average score for burnout was 32.5 (SD: 13.1), and the average score for work engagement was 7.5 (SD: 1.5). The structural model validity showed good fit. Demands significantly predicted burnout (b = 4.65, p ≤ 0.001), and resources predicted work engagement (b = 3.09, p ≤ 0.001). The interaction between resources and demands only predicted work engagement (b = −0.31, p = 0.115). Burnout did not predict work engagement (b = −0.09, p = 0.194).

The results partly supported the JD-R model, with a clear association between resources and work engagement, even when the demands were considered. Demands were only directly associated with burnout. The findings also identified a set of the most relevant aspects related to resources and demands, which can be used to assess and improve staff psychological well-being in children’s hospices in the UK.

Family members are often involved in the provision of care to a relative at some point in their life. Their role becomes inherently complex when their care recipient is interested in seeking medical assistance in dying (MAID). As assisted death for “grievous and irremediable conditions” was legalized in Canada in 2016, the perspectives of family caregivers have received little attention. To best support caregivers to individuals seeking assisted dying, healthcare practitioners must first understand the perspectives of family caregivers in this context. The objective of this qualitative study was to explore the experiences and support needs of family caregivers who are or who have provided care to individuals who are seeking or have sought MAID.

This study employed a qualitative descriptive design. Family caregivers supporting individuals living with grievous and irremediable conditions were recruited through social media outlets and support organizations. Data were collected through semi-structured telephone interviews and online surveys. Data were transcribed and analyzed using thematic analysis.

The study included 11 participants, comprising spouses, parents, and adult children. The research identified three prevalent themes: the caregiver experience including roles and responsibilities and the impact of their role; the MAID experience including the process and their thoughts and feelings about MAID; and caregiver insight into supports and services viewed as valuable or needed for the MAID process.

Study findings may assist in the provision and development of best practice resources and guidelines to support healthcare professionals involved in the delivery of MAID. Specifically, caregivers need to be supported in the context of their caregiving responsibilities to minimize the impact on their own lives and optimize their MAID experience.

Moral distress is associated with adverse outcomes contributing to health-care professionals’ worsened mental and physical well-being. Medical social workers have been frontline care providers throughout the COVID-19 pandemic, and those specializing in palliative and hospice care have been particularly affected by the overwhelming numbers of those seriously ill and dying. The main objectives of this study were (1) to assess palliative and hospice social workers’ experiences of moral distress during COVID-19 and (2) to identify and describe participants’ most morally distressing scenarios.

Using a mixed-methods approach, participants completed an online survey consisting of the Moral Distress Thermometer (MDT) and open-ended text responses.

A total of 120 social work participants responded to the study, and the majority of participants (81.4%) had experienced moral distress with an average MDT score of 6.16. COVID-19 restrictions emerged as the main source of moral distress, and an overlap between the clinical and system levels was observed. Primary sources of moral distress were grounded in strict visitation policies and system-level standards that impacted best practices and personal obligations in navigating both work responsibilities and safety.

In the first year of the COVID-19 pandemic, palliative and hospice social work participants indicated high levels of moral distress. Qualitative findings from this study promote awareness of the kinds of distressing situations palliative and hospice social workers may experience. This knowledge can have education, practice, and policy implications and supports the need for research to explore this aspect of professional social work.

This study evaluated whether COVID-19-specific risk factors (e.g., feeling guilty for not being present with the deceased at the time of the loss and feeling emotionally distant from the deceased prior to the loss) were associated with prolonged grief disorder (PGD) symptomatology or diagnosis among young adults bereaved due to any cause (e.g., illness and violent loss).

We surveyed 196 young adults who had a family member/close friend die during the COVID-19 pandemic. Participants completed the PGD-12 Questionnaire and the 10-item Pandemic Grief Risk Factors (PGRF) Questionnaire.

More time spent with the deceased before the loss and greater endorsement of pandemic grief risk factors were associated with increased PGD symptoms and a greater likelihood of meeting the diagnostic criteria for PGD.

The COVID-19 pandemic created unique risk factors that affected the grieving process for bereaved individuals, regardless of whether the death was related to COVID-19 infection. These findings add to a growing body of literature examining grief and loss within the unique context of the COVID-19 pandemic and suggest that there may be detrimental long-term psychological outcomes for these bereaved individuals, regardless of the cause of death. Routine screening for these unique risk factors in medical and psychological clinics is warranted to help identify those individuals who could benefit from early intervention. Also, it will be important to understand and possibly modify evidence-based interventions and prevention programs to directly address the identified unique PGRF.

Spiritual care is a component of quality palliative care, but healthcare providers have reported lack of training as a barrier to its provision. This paper describes the evaluation of the Interprofessional Spiritual Care Educational Curriculum (ISPEC)© which is a six-module evidence-based curriculum developed for teaching interprofessional spiritual care based on a generalist-specialist model of spiritual care.

The course was run online in 2020 and attended by 20 healthcare workers who were invited to join the evaluation. Questionnaires were completed by participants before the training program (baseline), immediately after the training (post), and 3 months following the end of the program (follow-up). After the follow-up questionnaires, participants were invited to join a Focus Group to expand on their responses. Descriptive and exploratory statistical analysis was performed on quantitative data, and qualitative data was subjected to Thematic Analysis.

Exploratory data analysis showed that self-reported competence, confidence, and comfort in providing spiritual care significantly improved following training (p = 0.002) and were maintained over time (p = 0.034). In qualitative analysis, the main themes were: (1) overwhelmed by content; (2) the importance of practical training; (3) spiritual care is for everyone; (4) spiritual care should come from the heart; (5) training needs to be inclusive; and (6) spirituality is culturally specific.

This article describes an evaluation of the ISPEC© spiritual care training course administered to an Australian healthcare cohort using an online format. These preliminary findings suggest that the ISPEC© program is effective in improving the ability of healthcare professionals to provide spiritual care. More work is needed to improve the cultural relevance of the program in Australia.

Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers.

This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process.

Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want.

Our findings suggest the necessity for greater awareness of patients’ and their relatives’ needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care.

Nursing students often encounter real-life trauma situations during their clinical experience and similar workplace environment and climate as professional nurses. This research was carried out to determine the reflections of the compassion fatigue levels of nursing final year students on their psychological resilience levels.

This research was conducted as descriptive and cross-sectional. The sample of the study consists of 250 final year nursing students. Data were collected using Personal Information Form, Compassion Fatigue Scale, and Resilience Scale. It was determined that the compassion fatigue and psychological resilience levels of nursing final year students were moderate.

It was determined that as the levels of compassion fatigue increased, psychological resilience decreased. A highly negative and significant correlation was found between the total and sub-dimension mean scores of compassion fatigue and psychological resilience (p = 0.001).

It was found that there was a negative and high level relationship between nursing students’ compassion fatigue levels and all its sub-dimensions and psychological resilience. Resilience can improve psychosocial functioning and professional performance, including for nursing students facing stressful clinical experiences. It is important to determine the compassion fatigue and psychological resilience levels of nursing students, to determine the existing problems, and to take initiatives for this.

Many aspects of palliative care, such as managing (complicated) symptoms, conducting goals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians. Previous research on the emotional impact of providing palliative care was mainly done in specialist settings. However, the majority of palliative care is provided by clinicians who are not specialized in palliative care, and can be supported by palliative care specialists only when needed. Therefore, this study aimed to gain insight into the emotional impact of providing palliative care on clinicians, both palliative care generalists and specialists.

A qualitative interview study among 21 clinicians (11 doctors and 10 nurses) working in hospitals, home care, or nursing homes in the Netherlands was conducted. Between February and June 2019, 13 palliative care generalists and 8 specialists were interviewed. Interviews were thematically analyzed by two researchers.

All clinicians considered the emotional impact of providing palliative care to be substantial and experienced both positive and negative aspects of providing palliative care. Several aspects of providing palliative care can support or undermine emotional stability. These so-called facilitators and barriers, such as practicing self-care and complexity of palliative care, were found at three different levels: individual, team, and organization.

Although clinicians experience providing palliative care as meaningful and valuable, the emotional impact is considerable. Negative and positive aspects often co-exist. Further insight into the dynamics and magnitude of the emotional impact of providing palliative care is needed in order to create a healthy working environment and develop adequate interventions.

In the early stage of dementia, persons living with dementia (PLwD) can identify their values and wishes for future care with a high degree of accuracy and reliability. However, there is a paucity of research to guide best practices on how best to incorporate advance care planning (ACP) in older adults diagnosed with mild dementia and therefore only a minority of these individuals participate in any ACP discussions. We developed an intervention called Voice Your Values (VYV) that healthcare professionals can implement to identify and document the values of PLwD and their trusted individuals such as friends or family.

This single-group pre-test and post-test design aimed to determine the feasibility, acceptability, and preliminary efficacy of the VYV intervention.

A convenience sample of 21 dyads of PLwD and their trusted individuals were recruited from five outpatient geriatric clinics. The tailored VYV intervention was delivered to the dyads over two sessions using videoconferencing.

In terms of feasibility, the recruitment rate was lower (52%) than the expected 60%; the retention rate was high at 94%, and the intervention fidelity was high based on the audit of 20% of the sessions. In terms of preliminary efficacy, PLwD demonstrated improvement in ACP engagement (p = <0.01); trusted individuals showed improvements in decision-making confidence (p = 0.01) and psychological distress (p = 0.02); whereas a minimal change was noted in their dementia knowledge (p = 0.22).

Most of the feasibility parameters were met. A larger sample along with a control group, as well as a longitudinal study, are requisite to rigorously evaluate the efficacy of the promising VYV intervention. There is emerging evidence that people living with mild dementia can effectively participate in identifying and expressing their values and wishes for future care.

Family caregivers play a vital role in care for people with serious illness. Reliable population-level information on family caregiving is scarce. We describe the socio-demographic and family caregiving characteristics and experiences of family caregivers of people with serious illness in the adult population.

We performed a secondary analysis of the cross-sectional population-based 19th Social-Cultural Changes survey. A random sample of 2,581 Dutch-speaking people aged 18–95, living in Flanders or Brussels, were contacted for participation in the survey between March and July 2014 using a stratified two-step sample. Differences between groups are described using Pearson chi-square tests and analysis of variance.

Response rate was 58.7% (1,515/2,581). Over a 12-month period, 7.6% of respondents provided family care for someone with a serious illness (n = 114). They were most often aged 55–74 (36.0%), women (57.9%), worked full-time (42.3%); 31.8% provided at least 10 h of family care each week. Family caregivers of people with serious illness, compared with family caregivers of people with other conditions, provided more medical and nursing care (33.3% vs. 22.5%, p = 0.027), and experienced a higher burden of family caregiving (p = 0.038) but a similarly high meaningfulness of family caregiving.

A considerable part of the adult working population provides family care for someone with serious illness. While family caregiving for someone with serious illness shows similarities with family caregiving for people with other conditions in terms of caregiver characteristics and the impact of caregiving on work-life balance and the meaning derived from it, it is also associated with increased burden.